SDK

Like many children with tics, my son is very sensitive to milk. Even tiny (hidden) amounts will make him start ticcing, visit the bathroom 20 times a day, and act in an unpleasant way. I was wondering if anybody has tried goats milk/products, and what effect this had on their children. Also, has anybody tried A2 milk (rich in A2 casein, and mimimal B casein)?

hi, I found your question very interesting as I am wondering the same thing about my 10 year old son. He has had tics over the past two years that are better these days especially when he follows a dairy free, artificial color free and artificial flavor free diet. The other day I was trying to explain to him why the colored sorbet was not good for him so for the first time I said to him explicitly "colors make you do more of this touching thing you do" ( I had classified his touching things several times more as a tic rather than OCD). So he laughed said: Mom, I just like doing things evenly. I have always been like that. Is there smth wrong with it?" He seemed to be so comfortable about it that I did not know how to react. Isthis OCD, perhaps mild OCD, since it does not occupy his life nor does it seem to bother him? Also, he has said to me before he does not realize that he does some of the "touching" (hence I had classified his behavior as tics).

Allison, my understanding is that provided there is no new strep infection, titers should show a down ward trend, although it may take six months for them to return to normal. Our January value was 680, by May it was under 200 (normal level). Then, In July it was up at 500 (so we knew that there was a new infection. What I do not know is if any infection other than strep can cause ASO titers to rise. What does your doctor say about your son's high titers? SDK

Cheri, what you say makes great sense to me given our experience. Do you by any chance know where the strep might be in the body other than the throat? Or are you saying that the strep would still be in the throat but that the swab tests only for one type of strain but not for others? SDK

Kim, yes, during the monthly monitoring of titers since January, it has happened twice so far that the titers went up with no fever, sore throat, headaches or other physical symptoms. Once, the swab was negative too (we did not take a swab the second time). There was an increase in silliness, activity level, and tics at both times. I am not sure what "explosive" means. If it means that there were NO tics before, and they started one day out of nowhere, yes they did (eye blinking only initially). At the same time, my son suddenly became silly, hyper, emotionally liable, food intolerant, and his hand writing deteriorated. His tics were not of that severety as Allison describes of her son. My son had frequent upper respiratory infections between the ages of 1 and 3 years and took loads of antibiotics back then. Last month we tested for yeast; it was found at a mild level, but we started treating it with Nystatin and probiotics. SDK

My son started tics, hyperactive behavior, and compulsive type of symptoms a year ago. It coincided with a strep infection. A neurologist told us that the only way to really check that he has PANDAS is to check his ASO titers monthly and to look for correlations with tic flare ups. Unfortunately, many doctors will not go along with monthly testing. We have found a pediatrician who seems to go along with it. It has proven invaluable in my opinion because my son has no sore throat and a negative throat swab most of the time. Since we are monitoring the titers, we can tell if he has had a recent strep infection and treat him immediately. I wonder if (as other have implied in their posts) there is strep somewhere else in his body. I suppose though he cannot be a permanent carrier since his titers went to normal level four months ago.

Allison, I was quite intrigued by your statement that your son has had no sign of illness. I always wondered how come my son never gets fever. I asked an immunologist about this, but he did not seem to think it was of any importance. I would be open to prophylactoc antibiotics. Which antibiotic and what dose does your son take? SDK

Hi Allison, thank you for answering in such detail. I was wondering how many strep infections your son has had since the initial episode last August. I think you are on permanent antibiotic treatment -- right? Does it seem to help to avoid strep infections? My son had three infections almost in a row last year (one in Sptember, one in October and one in December). Then there was a break until recently. Our problem is that he gets no symptoms, so it is easy to miss them. It is only through the titers that we could tell he had an infection last month (his values were normal in April but high again in July). His throat swab came negative too. He has started a Pfeiffer treatment for low zinc four weeks ago (he seems to be borderline low in histamine too). Not sure if the treatment helps yet. He tested negative for pyroluria. SDK.

Allison, I also wanted to say that molds seem to be an issue with my son too. I have no proof, but his tics are always worse on damp days. I am always keen to hear how your son is going since my son started with tics after a strep infection around the same time as yours. You seem to have more and longer tic free periods than we do. For us, January and February were almost tic free, but then we had continuously mild tics that changed every couple of weeks. A new development was also the onset of vocal sounds (very soft) and sometimes echolalia (repeating the last word of his sentence). Four weeks ago, we had a further increase of tics; tested negative for strep by swab but the titers came elevated again ( they had dropped to normal levels in April). Within the first day of penicillin, tics bacame milder and for a few days dropped to zero (I almost find it impossible to think it was the penicillin that did it). Then, they started to come back at a mild level. I understand your frustration so well --sometimes having problem free days is almost worse! You start thinking that you solved the problem! I was curious what kind of behavioral issues come up with your son. When the tics were at their worst 4 weeks ago, my son was extremely goofy and silly, was talking nonsense all the time, and could not sit still -- constantly bounced a ball or a balloon! SDK

Allison, I also wanted to say that molds seem to be an issue with my son too. I have no proof, but his tics are always worse on damp days. I am always keen to hear how your son is going since my son started with tics after a strep infection around the same time as yours. You seem to have more and longer tic free periods than we do. For us, January and February were almost tic free, but then we had continuously mild tics that changed every couple of weeks. A new development was also the onset of vocal sounds (very soft) and sometimes echolalia (repeating the last word of his sentence). Four weeks ago, we had a further increase of tics; tested negative for strep by swab but the titers came elevated again ( they had dropped to normal levels in April). Within the first day of penicillin, tics bacame milder and for a few days dropped to zero (I almost find it impossible to think it was the penicillin that did it). Then, they started to come back at a mild level. I understand your frustration so well --sometimes having problem free days is almost worse! You start thinking that you solved the problem! I was curious what kind of behavioral issues come up with your son. When the tics were at their worst 4 weeks ago, my son was extremely goofy and silly, was talking nonsense all the time, and could not sit still -- constantly bounced a ball or a balloon! SDK

Hi Alison, I feel exactly the same; hoping that the tics will not escalate to last year's level. The immediate strep test yesterday came negative, so we are waiting for the 48 hour result now. The TS forums are a great place to hear about other people's experiences; they will probably help to put the puzzle pieces together in the long run. It is a shame that doctors don't know enough to help. SDK

Hi Alison, I always find interesting to read your observations as both our kids’ symptoms started with strep, and we are trying similar things to help them. Yesterday, I showed your e-mail to my husband to further support my claim that hand writing issues we had last year were associated with his strep and tic issues. To sum up, here is what we have tried so far: 1. Nov-now: NO Artificial colors, flavors, preservatives (we have been very strict about this) 2. Nov –now: Dairy-free (we have been fairly strict, but every week there are one or two occasions where something that has dairy is consumed, e.g., a bagel with a bit of cream cheese) 3. Nov-January (Bonnie Grimaldi’s vitamins – half recommended dosage). I took him off in February because I wanted to test for vitamin deficiencies. We are restarting those as we are waiting for results. We have not given any fatty acids. I tried to start a few times but it seemed to me that they increased tics. 4. Watching tv-playing gameboy (no more that 30 minutes a day). Change of symptoms: 1. In September/October we had two strep infections. We had tics (eye blinking, head nodding), fears, anxiety, hyper behavior, mood swings, aggression, silliness, hand writing problems, lack of focus. 2. November/January. Minor tics (some head nodding, but mainly nose twitching). Only occasionally hyper and silliness, and lack of focus. This was despite the fact that in December there was another strep incidence. Hand writing progressively improved, ended up being nice and neat. 3. Since Mid February tics increased and new tics came up (a lot of nose twitching, making wrinkles in forehead, smth funny with tongue). More erratic on being focused, more irritable, and tries to irritate sibling more often. One thing I should note is that there might be a correlation with tics and damp days and tics and exercise (eg playing soccer). What vitamins have you being trying? Overall, do you think the vitamins, diet, tv restriction have made a difference? Or, do you think the most important thing is if there is a (strep) infection or not? SKe